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Polymyalgia Rheumatica and GCA

Also known as GCA - Giant Cell Arteritis, Temporal Arteritis

All discussions in this group

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  • Pinned

    Reducing pred: dead slow and nearly stop method

    Copied from Eileen's post in another discussion. A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get...

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    Research: GCA & PMR

    The Research & Development section of Queen Elizabeth Hospital Gateshead NHS Foundation Trust will now undertake qualitative research following the result of the basic survey which we did last year on ‘Your Ears’. We donated £1000 start-up costs. All future costs will now be paid by the NHS....

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    PMR-GCA website addresses and resources

    If anyone has any further suggestions for inclusion do not reply to this but please contact me separately. PMR-GCA NE can be found at www.pmr-gca-northeast.org.uk PMRGCA-NW SUPPORT GROUP http://www.pmrgcasupport.co.uk/ The forums within the NE site are here - http://pmrandgca.myfunforum.org/index.php...

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  • Thanks Again

    its a little over three years since I first posted a thanks for all the help in this forum. For some reason I stayed around, This is another thanks. It helps lots writing about my progress, and hopefully helps others. I'm currently taking 3mg/day pred, about ready to try 2.5. Stable. I don't...

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  • Could this be just a blip?

    New to this but glad to have found the forum. I'm 79 (m) and about 5 weeks ago started what appear to be classic symptoms: painful shoulders, weak arms (couldn't pull the duvet over when in bed), pains in thighs when driving for more than 30 minutes. A GP in France ordered a blood test (results...

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  • Is fatigue associated with Prednisone reduction in PMR?

    Hi, glad to find this site today I am 51 yr old female diagnosed with PMR in Feb. My most recent 2.5 mg reduction in Prednisone from 10 mg to 7.5 mg has brought on some shoulder and neck stiffness and pain but also I am feeling so tired after work. Feeling frustrated because I have been trying to increase...

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  • Diagnosed two weeks ago with GCA and PMR

    After sudden onset leg muscle weakness and high fevers for 3 weeks requiring hospitalization, I finally have a diagnosis of GCA and PMR.   My rheumatologist started me on 60 mg. Prednisone a week ago, and since I thought I knew better than her and was afraid of too high a dose, I took only 40 mg....

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  • Only one to go!

    One to go! I am sharing this for all those who are following in the same path and to give hope that, there is light at the end of the tunnel. Yesterday, I moved onto 1mg of prednisolone and after a 14 month tapering regime, there have been no flares to GCA and in the words of the song, "we are...

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  • Pain returning again, when to stop increasing pred?

    Hi. I was doing well on 25mg but last 2 days lots of pain back. Have been great after each increase whether it's days or weeks but then 50 per cent of pain returns. I know my doc won't want to increase more, & I am having some further investigations but this last period of wellness has barely...

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  • Diagnose with Lymes then PMR

    56 Diagnosed with PMR 20 MG of pred. Per day due to waking up one morning in extreme pain. Feeling like a pc. Of steel my wife had to move my legs out of bed and push me up and off to the ER Also Left hand swelling and feeling like a catchers mitt. Right hand same feeling but only a 3rd of the left....

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  • Newly diagnosed with PMR. This is awful!

    My doctor started me on 40mg of prednisone which was a magic bullet for my symptoms but I had some unsavory side effects. He dropped me to 20mg and I am managing on this dose. My mornings are pure hell though. My husband wakes me up an hour before I have to get up. He gives me my prednisone and a water...

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  • After my fall

    Hi all. I just wanted to say a big thank you to all you wonderful people who with your advice 11 days ago I posted about my fall in the shower,I did go to A&E fractured my left arm, knocked my head no real damage. I have taken it easy because I wanted to stay on 11mg a day. I am so happy that by...

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  • Struggling on Vacation

    Originally started on 15mg prednisone in April 2016 and reduced to 10mg over several months. Had to increase to 15mg when I travelled to Italy on vacation from the U.S. last summer. Then had an unrelated medical issue several months ago that forced me up to 20 where I was managing until last week. Last...

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  • diagnosed in March2017

    I am 70.  Experiencing weakness arms, thighs, increasing fatigue over two years before finally being diagnosed in March 2017.   Was on and off prednisone every two to three months, as GP kept saying it was not good to stay on.   Each time it was stopped I was back in bed within a day or...

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  • Advice Please

    I am currently reducing from 8mg to 7mg Pred by the dead slow method (previously dropped by 1mg every 4 - 6 weeks having started at 20mg). What I would like to know is, having eventually got down to 7mg for a whole week do I then start reducing to 6mg or do I stay at 7mg for a couple of weeks or so before...

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  • 54 years old great shape P M R.

    I work out about 4 days a week. Great shape. Trying to come from 10mg prednisone. But afraid of gaint cell. This is so new to me !!only 3month. Been to a few doctors. May have found one a like.  TheyLl tell me diet does not matter.  Which I don't believe.   I had to give up kick boxing...

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  • Opinion on recent dosage decrease

    I'm trying to decrease from 20mg prednisone that I've been on for a month or two. Dropped to 19mg three days ago. Today, the third day, I am feeling a return of the aches and pains and fatigue. Steroid withdrawal or flare.....how long should I stick with it to give it a  fair chance to hopefully...

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  • Neck pain

    hi been on 20 mg of prednisone for  2 weeks.  Severe pain in hips arms and groin has lessened to dull ache mostly on getting up in the morning or sitting too long.  But my neck pain is still ongoing.  Both sides and back of neck painful.  Does anyone else experience this? my...

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  • Chemo drug??

    Has anyone ever heard of anyone being given a course of chemotherapy for PMR? Someone I know said she had it a couple of years ago. She's now on 1 mg of PRED but has to have 80mg boosts? I wonder.....well ya know lol

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  • would increasing pred help

    I had reduced my pred down to 11mg on 1 August, I have been reducing 1 mg a month, all been well, went to Cornwall with my Fitbit which I purchased since I was diagnosed  in March With PMR. I walked 10,000 steps going up and down  hills and felt great. All well until I fell in the shower...

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  • Discouraged

    I had last written hoping to find a source of Medrol in a pill or liquid smaller than the 2mgs. available here in the US.  I was on my way down from 2.5 mg to 2.0 mg in the AM at the time, I think and hoping to keep reduction closer to 10%.  Anyway, that transition didn't go so well, and...

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  • Trying to find 1mg tables of Prednisolone

    I have been taking preds for over 7 years now for GCA/PMR, and have found that the ideal dose for me is 6mg per day, which was fine when I lived in the Uk as 5mg and 1mg were available to me. Last year my husband and I retired to Madeira, Portugal, mainly for the climate and relaxing way of life here....

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  • just going to start steriod tomorrow

    hi have been having joint and muscle pain since April. thought it was training pain for the race of life but not got no better so had ESR done which was only 25 but my wonderful gp feels that it is PMR so doing steriods 15mg for one week then blood test and stay on tablets until tis result and then a...

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  • Cortisone injection advice :

    Hi All : Advice please from those who have had Cortisone injections in the lower facet joint for Osteoarthritis' I have in my L4/5 and L5/S1 Bilateral facet degenerative disease ' MRI SCAN  Both Dr's have suggest I have the injection, but I have read it works for some and not others,...

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  • I have Polymyalgia but have a particular pain in one hip.

    I am a complete novice on this site and this is my first posting, but I was wondering if anyone else has experienced the pain I have been getting in one hip, which means that I can only walk slowly with the aid of a stick for very short distances. I am taking 20mg of prednisone a day which seems to be...

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  • Coping with Giant Cell Arteritis

    I was diagnosed GCA in October last year. CRP level was 76. Immediately put on high dosage prednisone and within weeks, CRP down to 4, currently on 7. Every test possible was conducted, cardiac, vascular, optic. Biopsy of minor temporal artery confirmed diagnosis which was first mis-diagnosed as TIA...

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  • Forgot pred!

    Last night I forgot to take my pred.  Slept well.  After breakfast thought "I don't feel any worse than usual I'll just wait till tonight and take pred as usual". Did a little housework then went for a 3/4 hour walk in the local Spa grounds.  Had a coffee and headed home....

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  • Fatigue is getting no better the lower I reduce

    I am currently on 6 days at two and a half pred ,I am in no real pain just the aches of getting older I reckon ,I manage to get out of bed ok  but the tiredness is really getting me down , I just don't seem to have the energy to do anything at all , I've suffered with fatigue pretty much...

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  • Pain free on 15 mg

    Recently diagnosed 10 days now.  Put on 20 mg for 5 days reducing to 15 mg 2 days ago.  Virtually pain free then this morning had bad pain in my neck arms and hips. also felt as if I was grinding my teeth all night and jaw/teeth painful but that better now.  Is this break through pain...

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  • Life after PMR ... not what I was hoping for!

    I've posted here a few times recently about the progression of my 2.5+ yr experience with PMR, most notably the disappearance of PMR symptoms along with the appearance of avascular necrosis in both shoulders, possibly caused by prednisone. Since then I have been slowly reducing to the final dose...

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  • An Odd Test result?

    Hi all, I have been away a long time dealing with two back fractures, which needed kyphoplasty procedures and rehab afterwards.  I guess the osteoporosis in my back was caused by using the prednisone so long three years.  Anyway I began reducing the pred from 20 some time ago down to 13 presently. ...

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  • Advice needed - possible flare

    Hi friends - my life has been rather complex lately. Have had PMR for 5 yrs, had been on3 mg past 6 mo. Last Feb I was diagnosised with Gall Bladder cancer that had spread to the liver. Both were successfully removed and lymph nodes clear. I am on 3rd of 4 cycles of chemo, solely for purpose of making...

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